CFS with PEM and brain fog, somewhat better after acetyl-L-carnitine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 12 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
I've had CFS since 2010 and haven't had much luck with any treatments.
In context ↗ - At worst: Moderate
I don't last more than 2 hours out and about or I end up wobbly and exhausted.
In context ↗ - Now: Somewhat better
I still have severe fatigue, but at least I don't feel like death is imminent!
In context ↗
Read from 27 of their posts and comments; links to the 12 this page draws on
Summary
Alpine 51556 had CFS since 2010 and spent about two years early on resting and doing nothing. In September 2022 daily 1500 mg acetyl-L-carnitine made them feel like a new person, easing PEM and brain fog enough to mow the lawn and walk around the block, though overdoing it still brought fatigue. A 2023 crash after severe stress eased with B vitamins and electrolytes; by 2025 they still had fatigue and found thiamine helped reduce it.
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What they tried
What they credit
Also tried
Their words about each treatment
- Acetyl L-Carnitine · Helped a lot
I just started consistently taking 1500 mg of Acetyl L-Carnitine daily and I feel like a new person.
In context ↗ - resting and doing nothing · Helped
I rested for about a year and a half and got quite a bit better.
In context ↗ - mini-trampoline exercise · Worse
I put the handlebar on my mini-trampoline and tried it out and I triggered the fatigue
In context ↗ - benfotiamine (B1) · Helped
I have better fatigue reduction with thiamine.
In context ↗ - b-12 · Helped
started on benfotiamine, b-12, a b-complex, magnesium and getting back to taking my usual N-acetyl cysteine
In context ↗ - b-complex · Helped
a b-complex, magnesium and getting back to taking my usual N-acetyl cysteine
In context ↗ - magnesium · Helped
the thiamine along with D and magnesium and potassium helps me
In context ↗ - N-acetyl cysteine · Helped
getting back to taking my usual N-acetyl cysteine
In context ↗ - electrolytes · Helped
I noticed that if I took electrolytes I felt better.
In context ↗ - homeopathic remedies · Helped
I also took a bunch of homeopathic remedies that are good for my symptoms.
In context ↗ - Vitamin D · Helped
Low vitamin D increases my pain exponentially. I notice when I forget to take it.
In context ↗ - a multi-vitamin · Helped
added Vitamin D, B1 and a multi-vitamin and my symptoms improved like 75%
In context ↗ - low fat, no alcohol diet · Helped
I basically went on a low fat, no alcohol diet and added Vitamin D, B1 and a multi-vitamin
In context ↗
Approaches: POTS medication · Alternative therapies · Amino acids and carnitine · Diet · Radical rest · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 2 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2010 | CFS beganI've had CFS since 2010In context ↗ | Not stated | |
| early years after onset | about two years of resting and doing nothing before able to do little bitsit took me about 2 years of just resting and doing nothing before I started to be able to do little bitsIn context ↗ | Moderate | |
| after about a year and a half of rest | rested almost fully and got quite a bit betterI rested for about a year and a half and got quite a bit better.In context ↗ | Mild | Radical rest |
| September 2022 | felt like a new person on daily acetyl-L-carnitine; could mow the lawn and walk around the blockI just started consistently taking 1500 mg of Acetyl L-Carnitine daily and I feel like a new person.In context ↗ | Mild | L-carnitine |
| August 2023 | crashed after significant trauma and stress: balance off, dizzy, severe brain fogI had a similar crash lately where my cognitive ability got way worse. It was after a significant trauma and lots of stressIn context ↗ | Moderate | |
| August 2023 | crash eased with benfotiamine, B vitamins, magnesium, NAC and electrolytesit seemed to help me. I'm much better. Still fatigued, but the other sypmtoms are hugely reduced.In context ↗ | Mild | Thiamine / benfotiamine |
| before December 2024 | symptoms improved about 75% on a low-fat, no-alcohol diet plus vitamin D, B1 and a multivitaminI basically went on a low fat, no alcohol diet and added Vitamin D, B1 and a multi-vitamin and my symptoms improved like 75%.In context ↗ | Mild | |
| November 2025 | still much improved; some fatigue and pain remainI have better fatigue reduction with thiamine.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It's helped me with PEM, brain fog, and just general energy levels.
In context ↗ - Brain fog
It reeeeeaally helps with brain fog too.
In context ↗ - Sleep problems
I have sleep issues too, but I think it's from other things.
In context ↗ - Pain & fibromyalgia
Low vitamin D increases my pain exponentially.
In context ↗ - Heart symptoms & palpitations
I also had chest pain and bouts of high blood pressure.
In context ↗ - POTS & dysautonomia
My balance was off, I couldn't think, I was dizzy, and brain fog was off the charts.
In context ↗
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